Friday, 8 April 2016

Activity tracking: war and peace

I bought an activity tracker (a Fitbit) last August. I have worn it for two periods, each of about 2 months. The first was a time of discovery: about tracking, about myself, and about the relationship between the two. That period was a little turbulent at times. I kept a diary, which documents many of my discoveries. I’m reproducing some of this below… but happy to share the full diary if anyone is really interested. I am aware the diary exposes several misconceptions about how the tracking works, but that’s the wisdom of hindsight.

I re-started wearing the tracker shortly before speaking at an event on health data analytics, and its role was mostly as a prop for certain kinds of conversations. But I did also look at the stats occasionally. One day I did 29000 steps, apparently – though I think a lot of that was bouncing a baby around rather than actually walking anywhere… but that’s still exercise, so that must be OK! That second period finished recently, provoked by the tracker suffering a software error such that it would not tell me the time, when I was in a situation when I needed to know it. Also by the fact that I was on an active holiday but the stats bore no perceptible relation to the activity, so it seemed pretty pointless. At work, it can be a useful prop when discussing health tracking: it’s the well person’s surrogate for the kind of health data tracking that is more useful (or even necessary) for people who are suffering from a clinical condition. But for really tracking my activity, it misses the point.

So here are the ups and downs of my early engagement with activity tracking.

Wednesday 26th August

The postman brought the fitbit in a torn jiffybag this morning. The item is in a very smart box, which can’t be opened without destroying it. I like the plum colour, but I’m less keen on the bright pink plastic that’s behind the display – I hadn’t thought to check that before purchase. This fitbit is also bulkier than ones I’ve seen previously – those were obviously a different model. There are no instructions other than to go to the Fitbit setup site, and a safety warning (printed so small it’s clearly not intended to be read). There are two USB devices. One is a short cable with a weird plug on the end. After turning this around for a minute, I match the connector to a port that I locate on the back of the fitbit. I guess I need to plug the other end into my computer… The other usb device is a mystery, until I realize that it must be for connecting the fitbit to the computer remotely. Neat. No idea how this would work with a phone, but since my phone is too old to be compatible, that’s not going to be a problem! The setup instructions are reasonably intuitive, but I have to wait two hours for the fitbit to charge before I can explore it any more. I get an email message to tell me the fitbit needs charging. That’s probably a nice feature. So far, so good.

Some time later: the fitbit is charged. I unplug it and put it on. I run upstairs and then check the counters. I have apparently walked 6 paces and climbed 0 stairs. That’s not a good start – I don’t think this device requires explicit calibration, so I’m not sure how much I’m going to be able to trust its numbers. I think I’m wearing it correctly…

Later: walking around the house, I am self-consciously swinging my arms as I walk. I don’t know what this is doing to the tracking (it’s hard to be tracking the counting while walking – in fact it seems to make that impossible). I hope that this self-consciousness will pass quickly!
After a walk: I have apparently climbed 10 flights of stairs on my walk. I got a congratulatory email about it. I was stupidly aware of not putting hands in pockets so that my arm would swing naturally as I walked.

Thursday 27th August

Both yesterday and today, I intentionally climbed an extra flight of stairs to up my stairs statistic. This is the only exercise-behaviour modification I’m aware of so far.
I managed to get out for a proper walk at lunchtime (even got back before the next major rain shower). Apart from intentionally dangling my arm so that it swung, I don’t think my behaviour was shaped by the fitbit. When I got home I received a congratulatory email for exceeding 5000 steps today. Still finding this slightly entertaining, and wondering what the next email will be…

Friday 28th August

I have just come back from a longish walk where I had the explicit intention to hit 10000 steps. I walked briskly for almost an hour. When I got to a point where I thought that I could walk straight back to my desk and probably have done the steps, I looked at the counter. Not even 5000! So I decided to walk a bit further. Walked what I estimated to be 500 steps, but it registered less than 300. So then I started counting: walk briskly for 100 steps then stop and see how the display has changed. Did this three or four times; each time, it only registered about 70 steps. So the calibration seems to be way off. This made me feel slightly dispirited, cheated and angry: seems like I will have to actually walk about 13000 steps for it to register 10000.

Sunday 30th August

Yesterday we were decorating, so I took the fitbit off for much of the day. Result is low stats, but I don’t think it would have registered much for teetering at the top of a ladder and pushing a paint roller around (or even for carrying said ladder) anyway.
I’m feeling a slight pressure (self-imposed) to do more steps, but realistically I don’t know how to fit this into my life when I’m already stressed and over-stretched by other demands that do no require walking anywhere.

Tuesday 1st September

The walk to work (with a heavy bag) was apparently over 1500 steps. The walk home (lighter bag, more ‘power walking’) was 1070. If getting a high count is what matters then it’s better to walk more slowly and with hands tucked into waist strap of backpack than to walk briskly, though I’m sure the latter is actually better for one’s health. This is a rather perverse incentive.
Interestingly, I have apparently covered over 7000 steps just getting to work and getting home again without leaving the office all day. That’s more than I would have expected.

10.30pm: trip to the climbing wall (including getting there and getting home) clocked up 2000 steps but zero flights of stairs. Obviously too vertical! Today, I got an emailed weekly summary. It contains some crazy figures (sleep duration and weight change, for example) that have no basis in fact.

Thursday 3rd September

Yesterday, I got to 9552 steps without even trying, and without even going to meetings in other buildings (other than catching the tube to a meeting at the end of the day). I am struck by how many “invisible” steps I take in a day in the office – a huge number compared to a day at home. It doesn’t feel like exercise at all. Mind you, I also apparently took a few steps (25 or so, if I remember rightly) while sitting on the train, albeit moving my arms around as I sorted things out. Conversely, I only registered 125 steps in an hour of Pilates, and there wasn’t even a perceptible raise in heart-rate at that time: what a reader would infer from my stats in that hour was that I was happily ensconced on the sofa doing nothing. So the hour of the day when I felt that I pushed my body most (the hour that will make me feel drained today) is the hour that registered least effort on the fitbit.

12 noon: I am using the fitbit tracker as another ‘grazing place’ to look when I’m seeking distraction from my current task. This is not good!

3.30pm: I went for a walk. I walked fast to raise my heart rate, and I swung my right arm, but I intentionally kept my left arm in my pocket to get a more accurate step count. I probably looked ridiculous. I honestly do not know whether my decision to take a walk was influenced by having a tracker or not. I did feel like I needed to get out and get some fresh air, but I probably walked faster and further because of having the tracker. I guess this is a Good Thing.

4.30pm: I’ve just reduced my daily step target to 7000, which seems more achievable than 10000. Yesterday, I got to 9650, but still didn’t feel any incentive to do the extra 350 required to get over 10000, because I didn’t “own” the 10000 step goal, even if that is what is recommended. And even if I believe I could achieve it reasonably easily if only I had a better work-life balance. Maybe with targets that I have set for myself I will have a greater incentive to own them and meet them…

9pm: To get through 7000 steps and 5km, I went for another brisk walk this evening. On the way back, the fitbit vibrated – never felt that before. By the time I’d looked at it, it immediately showed a heartrate of 183. And a step count of 7007. I assume that the step rate was what I was being notified of. And I’m hoping that that heartrate was a blip. The day’s stats show a “peak” heartrate for 10 minutes. Frankly, this doesn’t make sense, since all I was doing was walking.

Friday 4th September

On the way to work this morning, I was thinking: today, 10000 steps is a reasonable target. But I’d set my target down to 7000 yesterday. So that was the point where my fitbit did its celebratory vibrate. Big deal! I feel the need (if this thing is to be useful) to set a reasonable target for each day, but I don’t think that’s possible.
Looking at my stats for this afternoon, I noted that my heart rate seemed to go up at a point when I was stressed (into the “fat burn zone”). I realize that I don’t know whether or not raised heart rate is always a good thing, or whether it’s only (implicitly) a good thing when associated with exercise (rather than stress).
Today I have received two ‘congratulatory’ emails. The first was on “walking a marathon” (over several days). Big deal: this is patronizing. The second was on walking 10000 steps in a day; given the previous messages received, I would have felt cheated had this message not been received.

Saturday 5th September

Today the 7000 steps and 5km targets did their work: an hour ago, I hadn’t quite hit either, but all it would take would be a walk to the end of the road to hit both. So I did that (actually, slightly more), and also walked fast to get a raised heart rate after a day of hosting friends at home. In fact I’ve done 6km and well over 8000 steps, but if the goal had been 10000 steps I probably wouldn’t have even done this last little walk.
The issue of precision and accuracy is irritating. The fitbit clearly isn’t very accurate – that’s fine if you’re doing a mix of activities where it all balances out, approximately, in the end, but it’s unhelpful if the day happens to have a lot of one kind of activity that is poorly recorded – e.g. a long walk that is under-recorded by 30% or a strenuous Pilates or climbing session that barely registers at all (conversely, I suspect a rattly train journey would over-record outrageously). But it’s very precise. On Thursday, it reckons I burned 1491 calories, so it ‘marks me down’ for not hitting 1500 (i.e. being out by 9 calories). But today I get a smiley face for burning 1526. Me having set the target at 1500, which is an arbitrary number. There is no ‘grey zone’ on the fitbit: either you achieved your target or you didn’t. Which would be fine if the numbers weren’t fictional.

Monday 7th September

Yesterday, what with going to a country park and then a ceilidh, I naturally covered 14900+ steps. At bedtime, I walked along the corridor and up the stairs one extra time just to get over 15000. This does not have a material effect on my exercise (or health) for the day, and it was just to get through that number. It seems unlikely that I'll get any bigger multiple of 5000 steps in a very long time, if ever.
Today: As I settled down for the evening, I checked my stats, and I was just-a-little-under on all of them (except stairs). The deciding one was 6 minutes under on ‘active minutes’, and little time in ‘peak zone’ of cardio. These could not be addressed by walking around the house enthusiastically. So I went for a short, sharp walk. Part way there, I felt the fitbit buzz the 7k steps notification, but that wasn’t what was mattering to me: I did want to get all the measures into the ‘green’ zone. The terms of ‘active minutes’ and ‘peak zone’ aren’t ones I’ve thought about before getting the tracker so, at least in the short term, they are encouraging behaviour change, just by suggesting to me that these things matter.

Tuesday 8th September

Been climbing again. Fitbit shows slightly raised heart rate this evening, but I have apparently only had 24 active minutes all day (which were the walks to and from the office) and only nine flights of stairs. On the other hand, I’ve apparently walked 1.3km at the wall: uh? So there is a substantive mismatch between the fitbit’s assessment of my activity and my own. I’m coming to terms with the approximate nature of its counting of steps when they really are steps, but “activity tracker” is seriously a misnomer.

Thursday 10th September

So busy yesterday that I didn’t check stats at any point in the day. Would have liked to have been able to see the whole day’s stats (as a single day), but was too tired when I got home. It’s slightly irritating that I can’t check them on the train (I’d have had time then) because it needs wifi.

Friday 11th September

I’m starting to feel a certain ennui with the dashboard. I now have a sense of what activities register what measurements. Maybe it’ll be interesting when I do something different (walking day or teaching day for example), but not getting excited about it at the moment.

Sunday 13th September

I’ve been to Wales for the weekend. Yesterday I could not access my daily stats at all because I didn’t have a computer or a wifi connection, so all I have is summary stats (presumably, unless I pay extra for premium). Today, when I got home and did a sync, I got two congratulatory emails: one about “the march of the penguins” – the distance walked since getting the fitbit; this just felt patronizing (it was going to happen some day…); the second a “skyscraper badge” for climbing 100 floors today. AKA doing a walk up a hill. I’m not sure that getting a “badge” for this is convincing. I’m more interested in how much cardiovascular exercise this might equate to, and that’s not very clear, even in the day stats. In the weekly stats, Friday (when I walked to work then to a meeting and then home) appears to perform better than today. Maybe that’s right, particularly since I spent a lot of today in the car after the lovely walk, but intuitively today was more taxing because it involved a lot of jumping from rock to rock and going up hill. So there is a dissonance between the stats and the subjective experience. Who’s to say which is more accurate?
p.s. Monday 14th: I sent the “skyscraper badge” to my walking partner because she had earned it too. A strange kind of social effect of the fitbit providing data for people who are sharing an activity.

15th September 2015

Yesterday, even though I did my usual distance of walking and number of flights of stairs, I apparently only had 14 ‘active minutes’. Must mean I was too casual about my walking. So today I walked in as quickly as possible – I want my active minutes!

16th September

Thinking back to the day when I had fewer ‘active minutes’ than expected: I wonder whether it was in my performance or in the device performance? Was it perhaps in the wrong place on my wrist? Or not functioning properly? I have just no way of knowing…
Just realized that I have apparently only clocked up 26 active minutes today. I find this irritating. Sure: it’s been an office-bound day, but I’ve expended effort when I could!

17th September 2015

On holiday. So haven’t done much exercise due to being on train and plane much of the day. Our apartment is ground floor, so not much chance of doing many steps for the next 10 days – where to find steps to do??
Sardinia is hot, and if I were wearing a watch I would be taking it off (too hot and sticky), but I find myself curiously reluctant to take off the tracker in case I lose data. My head knows that this is ridiculous.

18th September

The tracker is becoming a topic of discussion. When my partner and I are together, he is asking how far we have gone, and teasing me about number of flights climbed up sand dunes (which I don’t know since I disabled that feature on the tracker and the wifi isn’t working to check or change this). After lunch, we had apparently only done 300+ steps all day. Time for a walk! Had to take tracker off for a swim, so probably the most cardiovascular activity of the day is the part of the day that was not recorded at all. I’m not worried about this, but it does highlight a limitation of the tracking.
10.30pm: I have resorted to going out into the garden to get a wifi signal so as to update the tracking. Turns out that the tracker thinks I’ve done quite a lot of cardiovascular today (good: going up and down sand dunes does feel quite effortful!)

21st September

I am surprisingly annoyed when I check the tracker after a day of climbing stairs (to and in a grotto) and walking along very soft sand (hard going) to be told that I’ve only done 21 active minutes. And that the heart rate did not get anywhere near peak while running up stairs. Subjectively, I’ve had a more taxing day today than yesterday and yet the tracker thinks otherwise. And I shouldn’t care about it, but to a small degree I do. So partly I just don’t believe this thing and yet I seek affirmation from it.
As noted some time ago, I have reduced my target step count and distance to be ones that I can reasonably achieve in a day, even a work day, but while on holiday my unofficial targets are 10000 steps and 8km. But I’m not going to change the tracker targets to these numbers because I want it to confirm targets that I can reasonably achieve, and I don’t want to feel judged by it for not achieving targets (extrinsic values), while I will happily aim for intrinsic targets that are higher. There’s some strange psychology going on here that I haven’t quite made sense of, but it’s something to do with feeling that the tracker targets are somehow public while my personal targets are private, and I don’t want to be seen to fail on the public targets while the private targets are just between me and myself.
I’m learning to interpret flights of stairs more in the way that the tracker seems to measure them so am more accepting of its numbers than I was three weeks ago, when some of its stair counts seemed crazy.
As yet, I haven’t hit its calorie target once. I have no idea how this number is calculated, and hence how I could achieve it, other than I’m guessing by doing significantly more cardiovascular exercise. At this stage, it would be good if it gave explicit feedback / advice on this rather than focusing on stupid badges of quasi-achievement (the most recent was a ‘helicopter’ badge for total number of flights of stairs climbed – do me a favour!!).

24th September

A few quick observations:
1.     I still don’t understand what constitutes an ‘active minute’, since an energetic walk up a hill apparently didn’t count as one but a gentle stroll along a harbour wall did. Bizarre!
2.     I’ve noticed that we’re using the tracker to reconstruct what we did: as in “what time did we leave?” (i.e. start this walk?) “I don’t know but we can check on the tracker later”.
3.     We’re still using it as a shared object to motivate a little more exercise and stair counting than I would have done on my own without it.

27th September

Yesterday I did an extra short walk in the evening to get it over 20000 steps (though I didn’t bother to do the same the day before even though it would have been a realistic possibility). When I next sync it, I’m expecting a ‘badge’ for that.
The inability to see ‘active minutes’ without synching is slightly annoying, but only in the sense that I want to get ‘success’ on all its measures, regardless of how that correlates with my own assessment of my active minutes.

28th September

Yesterday evening, I heard my partner telling his brother about the fitbit and how it had shaped our holiday with motivations to be active and climb steps.
Today, I have walked quite a lot, and been consciously energetic about it, but it still hasn’t registered as ‘active’. I find this annoying, and I’m also annoyed with myself for being annoyed. I somehow accept that I can’t really control the calorie count, but I don’t accept so easily that I apparently can’t control what counts as an active minute.

30th September

With so many people now around Bloomsbury, it’s really hard to walk fast, so it’s really hard to get the ‘active minutes’ without being positively antisocial. Which form of guilt would you like? Being antisocial, or failing to be active?
It’s still so inaccurate. There’s little pleasure in being credited for climbing stairs (or whatever) that you know you didn’t do, but lots of frustration in not being credited for climbing stairs that you know you did do. The stairs climbing counter is particularly inaccurate, in my experience.
And yet this thing is quite addictive. The fact that it can act as a watch is a real asset (otherwise it would be a difficult choice) – though when giving a presentation it was awkward trying to keep track of my own timing, and I need to deal with that for teaching next week.
7.20pm: It’s only recorded 18 active minutes today despite me charging around between meetings and to the train this evening being antisocial and stressed. I. Must. Stop. Taking. Any. Notice. Of. Its. Arbitrary. Counts. Of. Poorly. Evidenced. Data / calculations. I feel that the tracker is adding to my stress in what is already a stressful week.

9th October

Yesterday I clocked up over 15000 steps without even trying. I was teaching for three hours and also had to travel for a meeting. Probably quite a few of the “steps” were just me waving my arms around while teaching, but it’s striking that on a “normal” teaching day I can get up to a step count that would normally denote a pretty significant walk – e.g., much more than last Sunday, when I “went for a walk”.

11th October

On Friday I had another conversation around the tracker: every time I tried to look at the time in a meeting, it displayed the steps, and I commented on this, leading to a wider discussion of tracking and trackers and smart watches. But I’m not finding the stats particularly interesting any more. I know how many steps I do on a home day, a work day, a day with meetings elsewhere… And it’s not motivating me to do extra steps at all as far as I’m aware.

20th October

On Sunday, my partner and I went for a walk up a hill. He wanted to know how many flights it was. More engagingly, when we later faced a rise in the road we had a bet on how many flights of stairs we thought it would be. We both thought three but the tracker thought five. It feels playful in this context.
I’m still wearing it, mostly because the costs of doing so are very low. Mind you, I’m not looking at my data very often now, so the benefits probably aren’t great either. I apparently haven’t done my 30 active minutes many days in the past week: tut tut.

21st October

It’s the evening again. Five days out of the past seven I have apparently not hit the 30 active minutes target. At one level, this make explicit something I already know about my lifestyle: that I work too much and don’t exercise enough. But given the demands of work, that just makes me feel disempowered and guilty.

23rd October

Yet again, I’m surprised to find that I wasn’t active when I climbed five flights of stairs. But I’ve just looked up the definition of an active minute and it’s “the activity you're doing is more strenuous than regular walking” and “minutes are only awarded after 10 minutes of continuous moderate-to-intense activity” and something to do with METs, whatever a MET is (“metabolic equivalents”??). So short sharp bursts will never count. But apparently my natural walking is more strenuous than regular walking, so I can relax on my walk to work because it’ll probably still count as active. Must try that on Monday…

25th October

Actually, I’m not going to try that on Monday because I’ve decided I’ve had enough of the fitbit. I don’t find any interest in looking at the stats unless I’ve done something extra-ordinary. And as noted earlier it has an interesting social / playfulness value when I’m spending a day with someone who finds the stats interesting. But I know that a day sitting at my laptop and going to the climbing wall is going to give underwhelming data (I just checked to be sure and indeed I have zero active minutes despite climbing until my arms gave out). So what’s the point? I might as well wear just a watch that is colour coordinated with my outfit and that shows me the time whenever I turn my wrist.

26th October

I’m wearing an ordinary watch today. This feels surprisingly liberating – no need to walk in a slightly artificial way just to get the fitbit to record steps reasonably accurately. I did catch myself on the way to work still putting my left hand in my pocket, so I had to concentrate on walking more normally. I have also caught myself putting my right hand to my watch to click it to show the time (not necessary) and also flicking my wrist in an exaggerated way to show the time (also not necessary). I’m wondering how long it’s now going to take to unlearn these practices – I didn’t really notice them developing into habits. It feels liberating not to be monitoring my actions to get the recording as accurate as possible, and not to feel monitored by the fitbit. I think I’ve learned the main things I can learn from it – e.g., how many steps it is to get to and from work (about 2000 each way), how many steps I do just walking around the building (about 1000, which is more than I would have expected), what is considered to be a healthy distance to walk in a day, and what constitutes an “active minute”. Now it feels good to move on.

Friday, 4 March 2016

What's in it for me? The challenges of designing interventions for others

"Uninvited guests" is an entertaining short video showing possible, compelling, responses to well-meaning digital interventions for wellbeing that an elderly relative is encouraged to use.

Recently, a friend (I'll call her Hanna) told me about her experience of something similar, and it highlighted to me just how challenging it is to design well to help others to live well, and how important it is to make new designs of direct value, and easy to understand.

Hanna's parents are elderly, and had been plagued by nuisance calls: some just irritating, but others that involved mis-selling, "fixing" a computer virus, or otherwise leaving her parents feeling unsettled and cheated. She wanted to work with them to help avoid these calls. They installed Truecall on the line. And for a couple of weeks, it seemed to be working really well: letting through trusted callers while blocking unknown callers. A couple of unrecognised callers contacted her to request access and she extended the list of trusted callers in response. All good!

Then things started to unravel. An elderly acquaintance who wasn't on the list tried calling, did not understand the 'blocking message' immediately, and promptly drove round to her parents' house to ask what was going on. They found this really embarrassing, and it undermined their trust in the system. Hanna worked with her parents to add every known acquaintance to the list of trusted callers. But their fear of missing even one 'real' call had been triggered. At least: that was the surface presentation; I suspect there was more going on.

Apparently, when adding names to the list of trusted callers, Hanna's parents talked about the data entry as if they would then be able to use the list as a phone book. That would have been useful to them. But of course it didn't have that functionality (it's a call blocker, not a call enabler). They had a poor mental model of how Truecall worked and what it did. I'm guessing that this lack of understanding made them feel alienated and disempowered.

Hanna showed her parents their own call log, highlighting all the nuisance calls that had been blocked, and that therefore had not been disruptive. But this was apparently not persuasive at all: they could not remember the occasions where they had been persuaded by mis-selling, and now the concern about missing genuine calls dominated completely. Indeed, Hanna's parents seemed to grow in confidence regarding their ability to manage nuisance calls with every day that passed, and Truecall seemed to become a device that questioned their competence.

They told her about one of their friends also using Truecall. But she tells me she couldn't work out whether this was a positive comment (this is catching on; we're ahead of the curve) or a negative comment (that friend is getting old and having difficulty screening nuisance calls).

At one level, Truecall is a technology that does one job and seems to do it very well. At another level, it is a social device. The fact that them using Truecall was visible to a few of their friends and acquaintances seems to have made it unacceptable, even "embarrassing". I'm guessing it is preferable to them to be autonomous, to feel in control, and not to be seen to be using a call blocker, than to avoid nuisance calls. 
We all use technologies that we don’t fully understand. But we need to understand them well enough to feel in control, and it seems as if Truecall went beyond that for these elderly people and their equally elderly friends.

Truecall has had rave reviews, and it really does seem to do its job very well. So it was a surprise to me when Hanna told me about her and her parents' experiences. Maybe, even though I'm pretty sure that Hanna's parents are in the target market segment for Truecall, for something to work for Hanna's parents it would have to be even easier to use, even more transparent. I'm guessing it would have needed the following features:
  • everything accessible without obviously accessing the internet (so, visible on a dedicated display with the phone).
  • offering the 'phone book' capability so that they could more easily make calls.
  • having three call categories that are simultaneously enabled: trusted (come straight through); zapped (blocked, including all withheld numbers); and unknown (with a really easy way to move unknown numbers into trusted or zapped, whether before or after accepting the call).
I'm not sure that this is technically possible at the moment – or if it is, it might be prohibitively expensive to implement. But hopefully it will be possible in the near future. For me, the most important insight is that there are some very subtle emotional and social values that tip a technology from being something to engage with to being something that is rejected. In the uninvited guests video, the star of the show is technology savvy enough to subvert the best of intentions of his family and of the technology design; in Hanna's case, it seems that the only option for her parents was to reject the technology completely. We still have a lot to learn about how to design technology that is truly empowering.

Tuesday, 26 January 2016

The lifecourse and digital health

I've just been away for the weekend with a group of people of varying ages. Over breakfast, I was chatting with Diane (names have been changed), who surmised that she was the oldest person there. I looked quizzical: surely she's in her 70s and Edna is in her late 80s? But no: apparently, Diane is 88, and thinks that Edna is only 86. Appearances can be deceptive. Diane has a few health niggles (eyesight not as good as it once was, hip occasionally twinges) but she remains fit and active, physically and mentally. I hope I will age as well.

Meanwhile, last week I was at an Alan Turing Institute workshop on "Opportunities and Challenges for Data Intensive Healthcare". The starting point was that data sciences have always played a key role in healthcare provision and deployment of preventative interventions, and that we need novel mathematical and computational techniques to exploit the vast quantities of health and lifestyle data that are now being generated. Better computation is needed to deliver better health management and healthcare at lower cost. And of course people also need to be much more engaged in their own care for care provision to be sustainable.

There was widespread agreement at the meeting that healthcare delivery is in crisis, with rising costs and rising demands, and that there is a need for radical restructuring and rethinking. For me, one of the more telling points made (by a clinician) is that significant resources are expended to little good effect in the interests of keeping people alive, when perhaps they should be left to die peacefully. The phrase used was "torturing people to death". I don't imagine many of us want to die in intensive care or in an operating theatre. Health professionals could use better data analytics to make more informed decisions about when "caring" means intervening and when it means stepping back and letting nature take its course.

In principle, better data, better data analysis, and better personalised health information should help us all to be better manage our own health and wellbeing – not taking over our lives, but enabling us to live our lives to the full. My father-in-law's favorite phrase was "I'd like a bucket full of health please". But there's no suggestion that any of us will (or wants to) live forever. At the meeting, someone suggested that we should be aiming for the "Duracell bunny" approach to live: live well, live long, die quickly. Of course, that won't be possible for everyone (and different people have different conceptions of what it means to "live well").

This presents a real challenge for digital health and for society: to re-think how each and every one of us lives the best life we can, supported by appropriate technology. There's a widespread view that "data saves lives"; let's also try to ensure that the saved lives are worth living!

Tuesday, 8 September 2015

Experiences of home haemodialysis

An open letter to study participants:

You generously shared your experiences of managing your care on home haemodialysis (HHD), and of using the dialysis machine. You were one of 19 patients and families, or members of care teams, across four NHS Trusts who took part in the study. There were lots of common themes in what you told us:
  • about the challenges of learning to do dialysis in the first place (and how scary it was in the first few weeks at home), but how it became routine (“like driving a car”) over time;
  • about the challenges of troubleshooting, particularly when the problem was an unfamiliar one;
  • about the ways your home care team support you – and might be able to support you better if you had more seamless data exchange with your team;
  • about the common difficulties, such as clearing bubbles from the system and remembering to open and close all clamps at the right time; and
  • about the various strategies you have discovered for keeping yourselves safe.

The project has now finished, and we’ve been reporting the findings as widely as possible:
We hope that this project can ‘make visible’ your experiences and practices in managing care at home, and that this will help manufacturers to design next-generation systems, and nephrology services in planning effective home care support.

Thank you to everyone (patients, carers and professionals) who made the study possible.

Monday, 31 August 2015

The Digital Doctor

I’ve just finished reading The DigitalDoctor by Robert Wachter. It’s published this year, and gives great insight into the US developments in electronic health records, particularly over the past few years: Meaningful Use and the rise of EPIC. The book manages to steer a great course between being personal (about Wachter’s career and the experiences of people around him) and drawing out general themes, albeit from a US perspective. I’d love to see an equivalent book about the UK, but suspect there would be no-one qualified to write it.

The book is simultaneously fantastic and slightly frustrating. I'll deal with the frustrating first: although Wachter claims that a lot of the book is about usability (and indeed there are engaging and powerful examples of poor usability that have resulted in untoward incidents), he seems unaware that there’s an entire discipline devoted to understanding human factors and usability, and that people with that expertise could contribute to the debate: my frustration is not with Wachter, but with the fact that human factors is apparently still so invisible, and there still seems to be an assumption that the only qualification that is needed to be an expert in human factors is to be a human.

The core example (the overdose of a teenage patient with 38.5 times the intended dose of a common antibiotic) is told compellingly from the perspectives of several of the protagonists:

    poor interface design leads to the doctor specifying the dose in mg, but the system defaulting to mg/kg and therefore multiplying the intended dose by the weight of the patient;

    the system issues so many indistinguishable alerts (most very minor) that the staff become habituated to cancelling them without much thought – and one of the reasons for so many alerts is the EHR supplier covering themselves against liability for error;

    the pharmacist who checked the order was overloaded and multitasking, using an overly complicated interface, and trusted the doctor;

    the robot that issued the medication had no ‘common sense’ and did not query the order;

    the nurse who administered the medication was new and didn’t have anyone more senior to quickly check the prescription with, so assumed that all the earlier checks would have caught any error, so the order must be correct;

    the patient was expecting a lot of medication, so didn’t query how much “a lot” ought to be.
This is about design and culture. There is surprisingly little about safer design from the outset (it’s hardly as if “alert fatigue” is a new phenomenon, or as if the user interface design and confusability of units is surprising or new): while those involved in deploying new technology in healthcare should be able to learn from their own mistakes, there’s surely also room for learning from the mistakes (and the expertise!) of others.

The book covers a lot of other territory: from the potential for big data analytics to transform healthcare to the changing role of the patient (and the evolving clinician–patient relationship) and the cultural context within which all the changes are taking place. I hope that Wachter’s concluding optimism is well founded. It’s going to be a long, hard road from here to there that will require a significant cultural shift in healthcare, and across society. This book really brought home to me some of the limitations of “user centred design” in a world that is trying to achieve such transformational change in such a short period of time, with everyone having to just muddle through. This book should be read by everyone involved in the procurement and deployment of new electronic health record systems, and by their patients too... and of course by healthcare policy makers: we can all learn from the successes and struggles of the US health system.

Sunday, 30 August 2015

On rigour, numbers and discovery

Recently, I was asked the following:

In talking to my psychology seminar group about their qualitative lab I ended up looking at Helene Joffe’s book chapter on thematic analysis.  She suggests including diagrammatic representations of the themes, together with quantitative data about how many participants mentioned the theme, and it’s subparts.  This appealed to the psychology students because it gives them quantitative data and helped them see how prevalent that theme was within the sample.

And then today I saw another paper “Supporting thinking on sample sizes for thematic analyses: a quantitative tool".  It argues that one should consider the power of the study when deciding on sample size – another concept I’d only seen in quantitative research. 

Both of these sources seem to be conducting qualitative analysis with at least a nod towards some of the benefits of quantitative data, which appears to make qualitative analysis have more rigor.  Of course, simply adding numbers doesn’t necessarily make something more rigorous but it does add more information to results of an analysis and this could influence the reader’s perception of the quality of the research.  However, I don’t recall seeing this is any HCI papers.  Why isn’t it used more often? 

The answer (or at least, my answer) hinges on nuances of research tradition that are not often discussed explicitly, at least in HCI:

Joffe, Fugard and Potts are all thinking and working in a positivist tradition that assumes an independent reality ‘out there’, that doesn’t take into account the role of the individual researcher in making sense of the data. Numbers are great when they are meaningful, but they can hide a lot of important complexity. For example in our study of people’s experience of home haemodialysis, we could report how many of the participants had a carer and how many had a helper. That’s a couple of numbers. But the really interesting understanding comes in how those people (whether trained as a carer or just acting as a helper) work with the patient to manage home haemodialysis, and how that impacts on their sense of being in control, how they stay safe, their experience of being on dialysis, and the implications for the design of both the technology and the broader system of care. Similarly, we could report how many of their participants reported feeling scared in the first weeks of dialysis, but that didn’t get at why they felt scared or how they got through that stage. We could now run a different kind of study to tease out the factors that contribute to people being scared (having established the phenomenon) and put numbers on them, but to get the larger (60-80) participants needed for this kind of analysis would involve scouring the entire country for willing HHD participants and getting permission to conduct the study from every NHS Trust separately; I’d say that’s a very high cost for a low return.

Numbers don’t give you explanatory power and they don’t give you insights into the design of future technology. You need an exploratory study to identify issues; then a quantitative analysis can give the scale of the problem, but it doesn’t give you insight into how to solve the problem. For HCI studies, most people are more interested in understanding the problem for design than in doing the basic science that’s closer to hypothesis testing. Neither is right or wrong, but they have different motivations and philosophical bases. And as Gray and Salzman argued, many years ago, using numbers to compare features that are not strictly comparable – in their case, features of different usability methods when used in practice – is 'damaged' (and potentially damaging).

Wolcott (p.36) quotes a biologist, Paul Weiss, as claiming, “Nobody who followed the scientific method ever discovered anything interesting.” The quantitative approach to thematic analysis doesn’t allow me to answer many of the questions I find interesting, so I’m not going to shift in that direction just to do studies that others consider more rigorous. Understanding the prevalence of phenomena is important, but so is understanding the phenomena, and the techniques you need for understanding aren’t always compatible with those you need for measuring prevalence. Unfortunately!

Saturday, 22 August 2015

Innovation for innovation's sake?

As Director of the UCL Institute of Digital Health, my job is to envision the future. The future is fueled by innovation and vision. And there's plenty of that around. But the reality is much more challenging: as summarised in a recent blog post, most people aren't that interested in engaging with their health data (the ones who are most likely to be tracking their data are young, fit and wealthy), and most clinicians are struggling to even do their basic (reactive) jobs, without having much chance to think about the preventative (proactive) steps they might be taking to help people manage their health.

Why might this be? Innovation is creative and fun. It's also essential (without it, we'd still be wallowing around in the primordial soup). But there's a tendency for innovation to assume a world that is simpler than the real world: people who are engaged and compliant and have time to take up the innovation. Innovation tends not to engage with the inconvenient truths of real life, or to tackle the difficult and complex challenges that get in the way of simple visions.

We need a new approach to innovation: one that takes the really difficult challenges seriously, that accepts that the rate of progress may be slow, that recognises that it's much harder to change people and cultural practices than it is to change technology, but that these all need to be aligned for innovation to really work.

We need innovation that works with and for people. And we need to recognise that an important part of innovation is dealing with the inconvenient and difficult problems that seem to beset healthcare delivery, in all its forms.